Xyrem - does it cause Alopecia AND diffuse hair loss?

[runningfox]

I know there are already topics discussing Xyrem and hair loss, but I would like to hear from those of you affected by this whether you specifically had hair loss in the form of ALOPECIA or was it hair loss in the form of DIFFUSE HAIR LOSS?

Alopecia is listed as an "adverse event" in the Xyrem info sheet that comes inside every box of Xyrem. Alopecia is typically hair loss in patches or in a typical hair loss pattern on the scalp.

Diffuse hair loss is something different. It's all over the scalp, no rhyme or reason, no typical hair loss pattern, no patches or bald spots. It's just increased shedding and thinning all over.

I just saw a dermatologist because I've been having increased hair loss and his opinion was that it was not fungal, not alopecia, but diffuse hair loss.

I'm trying to determine if Xyrem is the culprit (my hair loss has decreased in quantity after I decreased my dose of Xyrem), but I don't have Alopecia, which is the only *listed* hair side effect of Xyrem.

I've had so many health issues in my life that I've gotten to the point where I"m incredibly health conscious and very strict about my diet (i.e., I won't eat artificial stuff, I eat all organic food, etc.). My vitamin, mineral, and omega 3 6 & 9 intake is so balanced that I couldn't even add anything else into my routine. I haven't had any extra stress lately. I've been on thyroid treatment for 9 months and the levels were last checked a week before my hair loss started and a few weeks after it started - they're normal. I don't know where else to point my finger but at my bottle of Xyrem!

Has anyone else had diffuse hair loss and not Alopecia from Xyrem?

[Irishvamp7587]

My hair loss is definitely from Xyrem and it's diffuse. I don't have any bald patches or anything, it's just an overall increase of hair shedding. I have a feeling that most people with hair loss from Xyrem are experiencing diffuse hair loss. I bet the people at Xyrem just didn't realize the difference between alopecia and diffuse hair loss or it was just easier for them to list alopecia. For awhile I could swear that my hair was starting to show the hair loss, like it was thinning out but now I'm not so sure that's what was happening and now I think my hair looks fine.

[runningfox]

Thanks irishvamp, it's reassuring to hear from someone experiencing the same thing. This is really depressing and that can't be great for my hair loss either. Since starting thyroid meds, my hair has started getting thick and long for the first time in my entire life. It's super obvious to me, maybe because I was so exited about having nice hair for once. I had my mom look at my scalp the other day and she said it looked normal aside from it looking like there was thin/sparse hair growth. That really didn't help me stop thinking about it.

How much Xyrem do you take?

[Willow2007]

About six years ago, I noticed I was shedding a lot of hair in the shower. Started checking and found that hair loss is sometimes connected to a lack of B vitamins, biotin especially. So started taking a B vitamin complex. I don't know if that helped, or I was just in a period of shedding, because I haven't done it since, and I started Xyrem AFTER the problem was over. so in my case, it wasn't connected to Xyrem.

If you read the contraindications and side effects of anything, there is a list of horrible things that could happen. I remember on one med I was taking, it said that 6 out of 100 had nausea. and 12 out of 100 had nausea on the placebo. Wellbutrin says that the side effect from wellbutrin is large alopecia areas all over your head is 4 out of 100. The placebo lists more than that.

I had heard that Xyrem causes overgrowth of the gums. I checked with my dentist and he looked it up and said that its not a side effect. Right after i went on xyrem, my fillings were falling out of my teeth, and my teeth were breaking off. Well, those fillings were all over 40 years old, and of course, they got old worn out and fell out, etc. I haven't had that problem lately at all. but of course, I worried that maybe the Xyrem was causing problems.

I'm sorry I'm not much help. But just to know a friend of mine tried biotin shampoo and swears it helps her.

[runningfox]

Willow - thank you for responding. I thought the same about the b vitamins & biotin. I'm on b vitamins (multi- and b12) and biotin twice a day. I was getting lazy about them but got a lot more strict about it once I noticed the shedding. Plus I get b vitamins in from fruits & veggies..the last time I had my vitamin b level checked it was something insane like 10000 units above the normal range. Might be TMI but my pee is always tinted that bright color that means you have excess vitamins. It's like that by noon & I take my b vitamins in the AM. Maybe I should try taking them twice a day in case my body is expelling them too quickly...

Funny you mention Wellbutrin and contraindications! I took the generic once and got intensely itchy about an hour later. No rash, hives, marks of any kind, just physically itchy ALL over my body. I changed my clothes, showered, changed clothes again, but couldn't stop itching. I looked at the insert to see if it was a side effect, and there was like .01% people who reported itching. I couldn't continue taking it.

I've also been having dental problems. Never thought to blame
e Xyrem! I don't have fillings but ime been having both inflamed and receeding gums and bleeding all the time! And I'm only 24! My dad is a dental health professional and he keeps telling me he doesn't know why it's happening but that I just need to floss and brush more. I grew up with brushing and flossing habits ingrained in me, I can't NOT do them..he doesn't seem to hear me when I tell him this. Maybe the Xyrem is also wrecking my teeth/gums.

[Irishvamp7587]

I'm on 4.5gm x 2. I noticed the hair loss when I got to 3gm x 2. I tried taking a break from Xyrem and slowly my hair loss started to decrease. After two weeks I went back on Xyrem at the starting dose and almost immediately my hair loss picked back up again, even at a low dose now. I've thought that maybe from all the extra human growth hormone that we are producing now that I was just getting increased hair growth and loss since it's not thinning out but I've read from other people that their hair loss resulted in obvious thinning hair. So I guess my original thought isn't correct. I just don't get why after almost a year of losing a lot of hair that it's not showing.

[Irishvamp7587]

Oh and I tried taking a B complex for awhile to help with the depression and anxiety from Xyrem but that didn't make a difference with my hair loss. I know they checked my B12 level and it was way above the recommended amount but supposedly there's no harm in it.

[yawningdog]

I am having receding gums in the past year as well. I think it has to sleeping with my mouth open. I never did that before Xyrem, but the deep relaxation that comes with xyrem leads to a slack mouth.

I lost A LOT of hair but, I had gone hyperthyroid on my regular dose of synthyroid.

[Willow2007]

My daughter has a mouth guard from her dentist that she puts in her mouth every night. She uses it because she grits her teeth, and has TMJ, and gets headaches. But it keeps her mouth closed at night and she feels much better.

[kateHA]

Conversation in our bathroom one morning last week after I got out of the shower, complaining about how much hair I shed:

My partner: um, is hair loss ever a side effect of Xyrem?

Me: I don't know...why?

Partner: don't take this the wrong way, but your hair kind of looks thinner than it used to.

Me: I dunno...I guess I could check the message boards and see if anyone has said anything...

(then a few minutes ago)

Partner: hey did you ever check the boards about the hair loss thing?

Me: no, I should do that.


And now here I am. Definitely diffuse hair loss, not in patches. I'm guessing it increased when I went up to 4.5x2 (from 4.0x2) in December. Will try adding in a b vitamin and see...had been meaning to do that anyway because my anxiety had also increased since my dose increased....

I'm ever so grateful for this board!!

[Geekwench]

One thing I would recommend to ANYBODY who is experiencing ANY side effects that you believe are coming from Xyrem- please see an endocrinologist and get your hormones (all of them) tested. Things that you may think are side effects of Xyrem may actually be side effects of your body producing human growth hormone in quantities that it never has before. A change in one hormone in your body affects all the other hormones, as well.

For women in particular, but even for men, if you have the interest and willingness to read some deeply-researched and incredibly detailed, comprehensive material, go to Amazon and get a copy of Elizabeth Lee Vliet's book, Screaming to Be Heard: Hormonal Connections Women Suspect and Doctors Still Ignore, Revised and Updated. This book is amazing and a must-read for anybody who wants to understand just how complex the human body is, and what kinds of effects hormonal imbalances can have on the body- man or woman. It's not just about the sex hormones, either; it's about ALL of the hormones in your body, whether they're produced in the brain, in the adrenal gland, or the gonads.

Regardless of whether you read the book, however, if you're having ANY side effects with Xyrem, you should see an endocrinologist and find out what's really going on in your body. It may be that some things are direct effects of Xyrem, but it may also be that things that you're experiencing are indirect effects, brought on by changes in your hormonal balance due to the increase in HGH production that comes with actually getting restful sleep for what is often the first time in our lives. You may find that there are actually simple treatments that could address things like hair loss. For example, I had noticed that I was losing more and more hair in the shower, and it was feeling thinner all over. I am now taking a birth control pill that is designed for women in my age group and helps regulate both estrogen and progestin, keeping them steady over the course of the month. I now lose only a few strands of hair in the shower, versus dozens as I was before, and that change happened in a MONTH.

Never underestimate the complexity of the human body, and never assume that a side effect is either direct or is something you just have to live with. Going to the right doctor and getting the right tests could actually provide information that could be used to not just treat, but eliminate things that may seem to be irrevocably associated with taking a medication (such as Xyrem).

[Geekwench]